A Kiwi Families guide to the Prader Willi Syndrome Association. What it does it do, and how you can access its support.

What is the Prader Willi Syndrome Association?

The Prader Willi Syndrome Association is a support group designed to advocate for, and offer support to those with Prader-Willi Syndrome, their families, and those who support them. They offer:

  • Support and networks to new families
  • Education, information and support to schools, teachers and students
  • Staff training for residential care providers
  • Advocacy for those who need it

What does the Prader Willi Syndrome Association do?

The Prader-Willi Syndrome Association offers a range of services including:

  • A 0800 HELP line (0800 4 PWS HELP) for 24 hour support, counselling, and information.
  • Networking of families with similarly aged children/adults.
  • Workshops and training for schools
  • Workshops and training for residential care providers
  • Workshops for parents and families
  • An Australasian Prader Willi Syndrome Conference every 2-3 years, providing financial assistance for families to attend where possible.

How is the Prader Willi Syndrome Association funded?

The association has a contract with the Ministry of Health to provide information, support, and education. Extra fundraising is done by volunteers.

How can I get their help?

Phone 0800 4 PWS HELP (0800 479 743)

or 021 748 190

Email ceo@pws.org.nz

Fax 06 372 7696

Prader-Willi Syndrome Association NZ Inc.

PO Box 258

Silverdale 0944

North Auckland

How much does it cost to access their help?

Information is free – pamphlets and brochures are free, but some more advanced texts will cost.

Membership of the Association is now free to all families who have an immediate family member with PWS.

Link to the Prader Willi Syndrome Association Website

www.pws.org.nz

The association website provides good information about Prader-Willi Syndrome, and offers plenty of practical advice and guidance for affected families.

Author

This information was compiled by the Kiwi Families team.

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